What happens after Tymlos?

Posted by alknapp @alknapp, Feb 21 4:55pm

I’m going to be finishing the 18 month course of Tymlos in April/May of this year. Endo is saying that I should follow that with Prolia (within weeks) and then Reclast.

Has anyone else followed that treatment plan or have any comments about it?

Thank you.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@hopefullibrarian

Katwhisperer, I'm definitely not an advocate for Prolia. I had one injection, joined this support group, learned more about it, and refused to continue the treatment. On Prolia, I had side-effects---back pain, and significant hair loss. I have no intention of taking it again unless my hip were to lose a lot more BMD, then I'd have to weigh the risks vs the benefits.
I've just started Evenity instead. I think there are a lot of doctors who don't understand how Prolia works but are a bit free and easy about prescribing it. I continue learning, and now know that it can be used safely for short periods and actually improves bone quality a little bit. The most impressive thing about it is that it increases BMD at the hip by 5-6% with just 3-4 treatments. Evenity is the only other OP drug that can do that. I got this information from an interview of Dr. McCormick. I took extensive notes, so I'm confident that I'm passing on the information as he presented it.
For some people, Prolia is a good option if used correctly and followed with a bisphosphonate (Dr. McCormick recommends Reclast). The key is finding a doctor who knows when and how to use it.

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Prolia is certainly impressive if you ignore the side effects and the potentially devastating rebound fractures that happen to some. I think Dr. McCormick offers a strategy of
1. a bone building med,
2. short term Prolia (2-4 doses),
3. following the Prolia with Reclast.
All the while following bone markers in order to avoid a sudden increase in bone breakdown if and when you stop the Prolia. And he warns if you go beyond about 3 doses (if my memory is correct) you have more risk of getting the rebound effect.
I'm thinking about this but it sure makes life more complicated and Prolia's rebound effect is just plain scary to me even with the strategy of following Prolia with Reclast.

Here's an interesting paper comparing Prolia to all the bio-phosphonates. It has charts showing the bone density changes year by year for each where the info is available. Prolia keeps increasing density for 8 years in some studies but there is a drop off at some bone sites around 3 years. The bio-phosphonates usually stop improving your bone after 2 years. All this shown in charts. So, Prolia totally wins in the bone gains department. But the paper doesn't do a through job on the negatives.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4426099/

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@rajmayo22

Plan to share my med info as I continue Tymlos until Aug 2024.

If anybody is interested, below are DEXA results showing 6 yr trend:

AP Spine (L1-L4) Statistically significant increase from previous scan.
07/27/2023 78 1.104 0.5 0.150 (15.7%)* 0.058 (5.6%)*
01/13/2022 76 1.046 0.0 0.092 (9.6%)* 0.032 (3.2%)*
12/01/2017 72 1.013 -0.3 0.060 (6.3%)* 0.060 (6.2%)*
10/02/2008 63 0.954 -0.8
*Denotes significance at 95% confidence level, LSC is 0.022326 g/cm2
------------------------------------------------------------------------

Total Hip(Left) Statistically significant increase from previous scan.
07/27/2023 78 0.800 -1.2 0.041 (5.4%)* 0.030 (3.9%)*
01/13/2022 76 0.770 -1.4 0.011 (1.4%) 0.013 (1.8%)
12/01/2017 72 0.757 -1.5 -0.002 (-0.3%) -0.002 (-0.3%)
10/02/2008 63 0.759 -1.5
*Denotes significance at 95% confidence level, LSC is 0.026675 g/cm2
------------------------------------------------------------------------

Femoral Neck(Left) Statistically no significant change from previous scan.
07/27/2023 78 0.607 -2.2 -0.008 (-1.3%) 0.008 (1.3%)
01/13/2022 76 0.599 -2.3 -0.016 (-2.6%) 0.011 (1.9%)
12/01/2017 72 0.588 -2.4 -0.027 (-4.4%) -0.027 (-4.4%)
10/02/2008 63 0.615 -2.1
*Denotes significance at 95% confidence level, LSC is 0.028808 g/cm2

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@rajmayo22 thank you for sharing your info and experiences. I wonder the the same thing as windyshores. Your L spine appear to be fine, and hips readings are alright per dexa. The femur neck is borderline heading towards osteoporosis, but not quite there yet, and pretty stable. In any case, wish you the best outcome from tymlos therapy!

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@awfultruth

Prolia is certainly impressive if you ignore the side effects and the potentially devastating rebound fractures that happen to some. I think Dr. McCormick offers a strategy of
1. a bone building med,
2. short term Prolia (2-4 doses),
3. following the Prolia with Reclast.
All the while following bone markers in order to avoid a sudden increase in bone breakdown if and when you stop the Prolia. And he warns if you go beyond about 3 doses (if my memory is correct) you have more risk of getting the rebound effect.
I'm thinking about this but it sure makes life more complicated and Prolia's rebound effect is just plain scary to me even with the strategy of following Prolia with Reclast.

Here's an interesting paper comparing Prolia to all the bio-phosphonates. It has charts showing the bone density changes year by year for each where the info is available. Prolia keeps increasing density for 8 years in some studies but there is a drop off at some bone sites around 3 years. The bio-phosphonates usually stop improving your bone after 2 years. All this shown in charts. So, Prolia totally wins in the bone gains department. But the paper doesn't do a through job on the negatives.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4426099/

Jump to this post

I think we got the same info from interviews with Dr. McCormick on OP meds. With Prolia, to get maximum benefit with minimal risk, he says 4 doses tops, but, in his opinion, it's better to stop at 3 doses. That was my understanding.

Thanks for sharing the link to the study on gains with Prolia, and each of the bisphosphonates. It's a great reference.

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@awfultruth

Prolia is certainly impressive if you ignore the side effects and the potentially devastating rebound fractures that happen to some. I think Dr. McCormick offers a strategy of
1. a bone building med,
2. short term Prolia (2-4 doses),
3. following the Prolia with Reclast.
All the while following bone markers in order to avoid a sudden increase in bone breakdown if and when you stop the Prolia. And he warns if you go beyond about 3 doses (if my memory is correct) you have more risk of getting the rebound effect.
I'm thinking about this but it sure makes life more complicated and Prolia's rebound effect is just plain scary to me even with the strategy of following Prolia with Reclast.

Here's an interesting paper comparing Prolia to all the bio-phosphonates. It has charts showing the bone density changes year by year for each where the info is available. Prolia keeps increasing density for 8 years in some studies but there is a drop off at some bone sites around 3 years. The bio-phosphonates usually stop improving your bone after 2 years. All this shown in charts. So, Prolia totally wins in the bone gains department. But the paper doesn't do a through job on the negatives.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4426099/

Jump to this post

Not surprising that the paper is filled with positives about Prolia while neglecting to mention much about the negatives.

Under the "Conflict of Interest Statement" section:
"OT has received fees from Amgen, GSK, Lilly, Nycomed, MEDA and Takeda as lecturer, consultant and/or scientific advisor."

Also, the report is from 2015 when many of the studies on the rebound effect were not out yet

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I am hoping to do the same thing with Evenity: 3 or 4 sets of injections!

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@hopefullibrarian

Katwhisperer, I'm definitely not an advocate for Prolia. I had one injection, joined this support group, learned more about it, and refused to continue the treatment. On Prolia, I had side-effects---back pain, and significant hair loss. I have no intention of taking it again unless my hip were to lose a lot more BMD, then I'd have to weigh the risks vs the benefits.
I've just started Evenity instead. I think there are a lot of doctors who don't understand how Prolia works but are a bit free and easy about prescribing it. I continue learning, and now know that it can be used safely for short periods and actually improves bone quality a little bit. The most impressive thing about it is that it increases BMD at the hip by 5-6% with just 3-4 treatments. Evenity is the only other OP drug that can do that. I got this information from an interview of Dr. McCormick. I took extensive notes, so I'm confident that I'm passing on the information as he presented it.
For some people, Prolia is a good option if used correctly and followed with a bisphosphonate (Dr. McCormick recommends Reclast). The key is finding a doctor who knows when and how to use it.

Jump to this post

I had amazing results at the hip after only 2 Prolia injections and DEXA results rose to a reading of 2.2. No side effects.
Taken off Prolia (insurance would not pay apparently to treat osteopenia) and my doctor knew nothing about rebound effects. BUT I did thanx to this wonderful site!!!!!
My doctor (PCP with a lot of old people in his practice) wanted to stop Prolia cold turkey; I telephoned Amgen who would not confirm rebound effects let alone any recommended follow-up.
Thankfully I found an NIH summary on the issue, sent it to my doctor and was completely surprised when he not only read it, but also prescribed Fosomax as the 'step-down' drug.
The year of follow-up Fosomax will end in May and I have no idea what/how my doctor will do next as biomarkers were never taken.

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@formisc

Not surprising that the paper is filled with positives about Prolia while neglecting to mention much about the negatives.

Under the "Conflict of Interest Statement" section:
"OT has received fees from Amgen, GSK, Lilly, Nycomed, MEDA and Takeda as lecturer, consultant and/or scientific advisor."

Also, the report is from 2015 when many of the studies on the rebound effect were not out yet

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It's also hard to understand why the rebound effect was not noticed in those early studies. It doesn't seem like it would be hidden. I mean you take Prolia for 3 years in a trial. You stop. Then, if you are one of what ever percent this happens to, you start fracturing like crazy. How would that not be noticed? I don't know why it wasn't but it does not seem logical. The rebound effect is not something that takes 10 years to develop like say a cancer might develop many years after a pesticide exposure. It's crazy quick.

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@ymv

My rheumatologist who I see for autoimmune disease as well as osteoporosis has said Prolia is only option. However I recently consulted with an endocrinologist who said that her recommendation is Reclast. She also said that, if I desire, she would manage my OP. I have decided to change from rheumatologist to endocrinologist for management as I don’t want to be on Prolia the rest of my life. Also I had 2 unusual osteoporotic fractures while on Prolia.

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How old are you and what osteoporosis drugs have you taken prior?

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I just started Tymlos. My doctor, who specializes in osteoporosis, says we'll do a dexa at 18 months. Maximum 2 years on Tymlos. Then Prolia, but not more than 3 years because otherwise you have to stay on it forever if you go more than 3 years. I'm not sure what happens after the 3 years on Prolia.

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@susyt

I just started Tymlos. My doctor, who specializes in osteoporosis, says we'll do a dexa at 18 months. Maximum 2 years on Tymlos. Then Prolia, but not more than 3 years because otherwise you have to stay on it forever if you go more than 3 years. I'm not sure what happens after the 3 years on Prolia.

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Thanks, that’s kind of what my doc wants to do. Tymlos, Prolia, then Reclast.

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